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A 47-year-old woman with a newly described COL7A1 gene mutation was diagnosed with dystrophic epidermolysis bullosa (DEB), and possibly an unusual subtype affecting the extremities. She had a history of severe toenail alterations and periods of blistering skin since childhood. “Given the…
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Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
Using exon skipping therapies may be an easy, affordable, and effective approach for people with epidermolysis bullosa (EB) with amenable mutations, an early study suggests. Such therapies would promote the production of a slightly shorter, but working version of the skin-related protein that is missing in people with EB, researchers said.
Columnist Lena Riedl had always considered working in a restaurant impossible due to her EB. But a recent opportunity proved her wrong.
Want to stay up to date? Click the link below to find all of the latest news related to epidermolysis bullosa.
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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